Location

Start Date

4-20-2017 2:40 PM

End Date

4-20-2017 2:55 PM

Department

Occupational Therapy

Student Type

Graduate

Faculty Mentor

Laura Greiss Hess, Ph.D., OTR/L

Presentation Format

Oral Presentation

Abstract/Description

Fragile X Syndrome (FXS) is the most common form of inherited intellectual and developmental disability and a single gene cause of autism spectrum disorder (Smith, Hong, Greenberg & Mailick, 2016). Sertraline (trade name Zoloft), a common SSRI, has been used clinically to treat anxiety, irritability, and socialization problems in FXS. A randomized control trial found low doses of sertraline, significantly improved social skills, expressive and receptive language, visual tracking and fine motor skills in young children (2-6 years old) with FXS (Hess et al., 2016). Research studies on pharmacologically-based treatment methods have provided promising and valuable information about potential future treatments of FXS (Berry-Kravis et al., 2013; Hessl et al., 2016). However, a lack of adequate outcome measures in targeted medication treatment trials has made it difficult to assess improvements in occupational functioning and independence. Current research has focused on quantitative data, yet these normative tests do not reflect children’s ability to improve in everyday life nor show the daily lived experiences in context of children with FXS from the family’s point of view. The purpose of our study is to examine alternative outcome measures – in the form of semi-structured interviews which are occupation centered. The main research question is as follows: can semi-structured interviews reveal differences in change over time in lived daily family experiences when studying children with FXS during a clinical medication trial? Preliminary results will be presented.

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Apr 20th, 2:40 PMApr 20th, 2:55 PM

Family Occupations as an Outcome Measure in a Clinical Trial for Fragile X Syndrome

Guzman 114, Dominican University of California

Fragile X Syndrome (FXS) is the most common form of inherited intellectual and developmental disability and a single gene cause of autism spectrum disorder (Smith, Hong, Greenberg & Mailick, 2016). Sertraline (trade name Zoloft), a common SSRI, has been used clinically to treat anxiety, irritability, and socialization problems in FXS. A randomized control trial found low doses of sertraline, significantly improved social skills, expressive and receptive language, visual tracking and fine motor skills in young children (2-6 years old) with FXS (Hess et al., 2016). Research studies on pharmacologically-based treatment methods have provided promising and valuable information about potential future treatments of FXS (Berry-Kravis et al., 2013; Hessl et al., 2016). However, a lack of adequate outcome measures in targeted medication treatment trials has made it difficult to assess improvements in occupational functioning and independence. Current research has focused on quantitative data, yet these normative tests do not reflect children’s ability to improve in everyday life nor show the daily lived experiences in context of children with FXS from the family’s point of view. The purpose of our study is to examine alternative outcome measures – in the form of semi-structured interviews which are occupation centered. The main research question is as follows: can semi-structured interviews reveal differences in change over time in lived daily family experiences when studying children with FXS during a clinical medication trial? Preliminary results will be presented.